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What is gastroschisis?
Gastroschisis (gas-tro-ski-sis) is an opening in the abdominal wall through which the internal organs push outside of a baby's body. (See illustration at the right). During fetal development, the abdominal wall fails to close properly, leaving an opening. The opening is usually to the right of the umbilical cord.
This birth defect is not commonly associated with any other defects except bowel strictures and/or atresias (narrowing of the intestines). It occurs in approximately 1 out of every 5,000 births.
What causes gastroschisis?
Experts do not know what causes gastroschisis, but it is associated with younger maternal age and rarely occurs in mothers over 30 years of age. It is not related to anything the mother ate or did during pregnancy.
Prenatal diagnosis of gastroschisis
Doctors may suspect gastroschisis when the alpha fetoprotein blood work is elevated. This blood test also may be referred to as a "triple screen" or “quad screen.” An ultrasound can confirm the diagnosis. With ultrasound, the bowel and perhaps the liver will be seen floating in the amniotic fluid.
If your baby has gastroschisis, your obstetrician likely will refer you to a maternal-fetal medicine specialist (a doctor that handles high-risk pregnancies).
How does gastroschisis affect my baby?
Gastroschisis is usually an isolated defect. It is not typically associated with other abnormalities or with chromosome disorders. The only problems that are common with these babies are related to their gastrointestinal system.
Approximately 20 percent will have some type of gastrointestinal abnormality (also known as complex gastroschisis) such as:
- Atresia (passage is blocked)
- Perforation (a hole in the intestine)
- Volvulus (twisting of the bowel than can lead to the blood supply can being cut off)
- Infarction (blood supply has been cut off, and that area will be damaged)
Babies with gastroschisis are at an increased risk for being stillborn. The incidence of stillbirth is approximately 5 percent. Experts estimate that as many as 75 percent of babies with gastroschisis will be classified as growth restricted. This means the baby weighs less than we would expect for the gestational age.
A baby with gastroschisis will need to have surgery soon after birth, so it is best if they are born at a hospital with a neonatal intensive care unit so the hospital can offer appropriate care for both baby and mother.
How does the gastroschisis diagnosis affect the pregnancy?
If your baby has gastroschisis, you likely will have to undergo some additional tests and perform monitoring you wouldn’t have to in a normal pregnancy.
Ultrasound: The diagnosis of gastroschisis will be confirmed by ultrasound. Because gastroschisis usually is not associated with chromosomal abnormalities, an amniocentesis is not normally necessary. However, if the liver is outside the abdominal cavity, doctors may suspect that the defect could be a ruptured omphalocele. Omphaloceles are associated with chromosomal abnormalities, so in that case, your doctor may offer an amniocentesis.
A baby with gastroschisis often will be smaller than would be expected. Therefore, you will have monthly ultrasounds to assess your baby’s growth. If there is a concern about your baby’s size, your doctor may order ultrasounds more frequently. He or she may also order additional tests to confirm your baby’s well-being.
Fetal movement counting: Fetal movement counting will begin at approximately 26 weeks of gestation. You will be instructed to count your baby's movements once a day, every day, for a maximum of two hours. Your baby should move a minimum of 10 times in that two-hour period. If your baby moves 10 times in 10 minutes, you are done for that day. However, if later in the day you notice your baby is not moving as much, you can always repeat the test. It is good to pick the same time each day and to do the test after eating. We often recommend doing fetal movement counting after a meal. If your baby fails this test, call your doctor immediately or go directly to labor and delivery.
Non-stress tests and biophysical profiles: Twice weekly non-stress tests will begin at around 32 weeks of gestation. Weekly biophysical profiles (BPPs) will begin at the same time. A biophysical profile combines the results of the non-stress test with an ultrasound.
Delivering your baby
Your doctor may schedule delivery between 35 and 37 weeks gestation because of the increased risk for stillbirth. Labor usually is induced. The preferred method of delivery is vaginal. This defect does not require that a cesarean section be performed for delivery except for usual reasons.
Benefits of delivering at Froedtert
If you decide to deliver at Froedtert & The Medical College of Wisconsin Froedtert Hospital Campus, you will deliver just down the hall from where your baby will be cared for. You will receive a tour of the Birth Center before delivery. The Birth Center is actually located within Children’s Wisconsin. All of the specialists you will need to care for your baby are immediately available to you and your newborn.
Institutions such as Froedtert Hospital and Children's Wisconsin can care for both you and your baby, keeping you together and avoiding the trauma of having to transport your baby after birth. Babies born at Froedtert Hospital also get into surgery faster, which decreases the chance of injury to the exposed bowel. Babies born at Froedtert Hospital get to the operating room within two hours, while those born elsewhere average more than six hours to get to surgery.
How do you treat gastroschisis?
Because the development of this disorder happens very early in the pregnancy, prolonged exposure to amniotic fluid causes the exposed bowel to become thick, swollen and inflamed. Once your baby is born, the internal organs will be exposed to air and unprotected. This makes the bowel more susceptible to infection and causes your baby to lose heat and fluids.
Your baby will need surgery. Until surgery, we will place the lower half of your baby's body in a bag to hold moisture and heat in.
During surgery, we will put the organs back inside your baby's abdomen. If possible, the entire bowel will be put back into the abdominal cavity during this surgery. This is referred to as a "primary closure." If the intestines do not all fit, we will place the remainder of exposed bowel in a sac or "silo" and put the intestines back into your baby’s abdomen gradually. The sac will be reduced daily or as your baby tolerates. We will close the abdominal wall at a later time, once all the bowel is in the abdomen.
What happens after surgery?
Help with breathing: After surgery, your baby may not be able to breathe effectively on his or her own due to the increased pressure on the diaphragm from the bowels that are now in the abdominal cavity. We will place a special tube at the time of surgery to assist with breathing (if it was not needed earlier). This tube will stay in until your baby can breathe effectively on his or her own. Typically, babies no longer need support from a ventilator after about 3 days after final closure of the abdomen.
Keeping pressure off the diaphragm: At delivery, we will place another tube into your baby's stomach. This tube will either be placed through the nose, which is a nasal gastric (NG) tube, or mouth, which is an oral gastric (OG) tube. We will apply suction to this tube to keep the stomach empty so as not to cause more pressure on the diaphragm.
Placing IV and other lines: Your baby will not be able to eat for a while after surgery. Some special IV lines will be put in place while your baby is in the operating room for surgery.
- We will place a central IV line so we can give nourishment (vitamins, minerals, calories, fat) for a prolonged period of time.
- We will place an arterial line in one of the arteries in the arm. This is so we can:
- Give IV fluid and medications
- Monitor blood pressure
- Remove blood for lab work
- Before your baby goes to surgery, we will put a peripheral IV in his or her hand.
Medications: Your baby may be on a variety of medications that may include:
- Antibiotics to fight infection
- Pain medication to control pain after surgery
Swelling after surgery: Your baby may look puffy or swollen after surgery. The upper and lower legs may be especially swollen. This is called edema. It will go away as your baby gets stronger and his or her body adjusts to the pressure of the bowels being back in the abdomen.
Providing nutrition: Because babies with gastroschisis cannot eat for a prolonged period, special nourishment is given through the central line. Total parenteral nutrition is a solution that contains protein, fats, sugar, vitamins and minerals. This will supply your baby with all nutritional requirements until he or she is able to take food by mouth.
The hardest part of recovery for babies with gastroschisis is learning to eat and tolerating food. Their bowels were thick, swollen and inflamed at birth, and they require a long time to adjust to having them inside the body. In approximately 10 percent of infants with gastroschisis, there will be bowel atresias (narrowing). These infants may then need additional surgeries to remove these narrowings to allow normal passage of food.
We wait for signs from the baby that the bowels are beginning to work. These signs include:
- Bowel sounds
- Spontaneous passing of stool
- A decrease in the drainage coming from the tube in the baby's stomach
Feedings usually are started at a slow rate. This rate is gradually increased as your baby tolerates.
Will I be able to help care for my baby after surgery?
Yes. Please ask your baby's nurse about ways to interact with and care for your baby.
We encourage all mothers to breastfeed their babies. If you would like to breastfeed, we can help you pump your breast milk until your baby can eat by mouth. A lactation consultant can help you get started with pumping and answer any questions you may have. Your milk will be frozen and stored in the Neonatal Intensive Care Unit (NICU) until your baby is ready for it. The NICU has breast pumps and private rooms available to you when you are visiting.
When can my baby go home?
Your baby can go home when he or she is eating and tolerating enough food to allow growth and weight gain. A typical baby with gastroschisis will be in the NICU for approximately 6 to 12 weeks. A lot of this time will be spent working with him or her on learning to eat. There are speech therapists available to assist in encouraging him or her to take a bottle and lactation consultants to help with breastfeeding.
About 10 percent of babies with gastroschisis will have complications such as blockages of the intestine or an inability to eat by mouth. These complications may require additional surgery. If your baby needs additional surgeries, he or she may have a prolonged stay.
What is my baby's long-term prognosis?
Overall, children born with gastroschisis have an excellent prognosis. At Children's Wisconsin, the survival rate for babies treated for gastroschisis is 100%.* We do not expect your baby to need any special care once you go home. He or she may go home on medications to prevent and treat acid reflux and will likely remain on these medications for the first few months after discharge. Your baby's pediatric surgeon and your regular pediatrician will offer the necessary follow-up care.
*Based on data from 2015 - 2017.
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